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new diagnosis

I have just been diagnosed with ms. The neurologist recommended that i make changes to my diet and carry out exercise. Does anyone have any suggestions?

Also i suffer from fatigue and feel very tired after walking more than about 100m. I am wondering whether i should try to get a wheelchair to assist with mobility when going further. Does anyone have any recommendations?

Thank you in advance.

Hi Vic,

I’m sorry to hear of your diagnosis. Although, for some of us, it’s a time of mixed emotion, with a feeling very like relief - especially if we’ve felt ill for some time, and worried what it might be, or even that we might be going mad!

It’s quite unusual for neuros to recommend dietary changes, especially as there’s little scientific backing for a dietary approach to MS - although there are many different regimes you can try, that some people swear by.

I wonder if you are overweight, or have other health problems the neuro thinks need addressing? What changes is he suggesting?

Exercise is generally believed to be both good and safe for people with MS, but what will be realistic and suitable depends very much on your own personal circumstances, as MS is such a hugely variable disease. Whilst a few will run marathons, that’s probably beyond the scope of most of us. Pilates, yoga, and swimming are all supposedly quite good for MS (none of which I practice, but keep meaning to).

But in general, anything you can still do without making yourself feel too ill is fine. Experiment will show what you’re OK with, and what you’re not.

Opinions vary on this, but personally, I’d work on trying to improve your walking range and endurance, rather than opting straight for a wheelchair.

Some people feel a wheelchair has changed their life - for the better! But I suppose it really depends how bad your walking is, and, if you’ve recently had a relapse, there may still be prospects of recovery.

A couple of years ago, I could barely make it to the local post office without coming over all weak and wobbly. I’ve not measured exactly how far that is, but it can’t be more than about half a mile. I panicked, and foresaw rapidly being housebound. But since then, I’ve gradually extended my range and endurance, 'til I can regularly walk three miles, now. Early progress was barely perceptible, and I often wondered if I was doing myself more harm than good. But now I’m regularly walking further than I did when I was well, and think it can’t have done me much harm.

Tina

Hi ViK

Sorry to hear about your diagnosis. I’m not diagnosed I’m probable MS but may be able to offer some advice as have been on the forum for a while.

As Tina said it can feel like a rollercaoster of emotions even if you’ve suspected MS - having it confrimed makes it all the more real so be kind to yourself and take things easy for the moment.

In terms of diet - again Tina has summarised things well in that there is no hard evidence to support a specific diet for MSers though you’ll find different people follow different things. Personally I think having a normal healthy diet is generally a good thing to do regardless of MS.

For exercise I do yoga which I found doesn’t wear me out and also helps if you have stiffness and spascticity. If you’re going to try go for something like hatha yoga which is quiet mild. It’s also important to have a teacher who supports you and is aware of your health issue so any things you can’t do can be adjusted. Swimming is good because water is cool and a lot of MSers find symptoms temporarily increase when you get hot. I think what ever you try start slow and build yourself up. I’m at the moment starting running again (though I’m no where near what I was like ebfore neuro symptoms), I’m doing 10mins 1-2 /week and if I feel okay with that then will increase slowly.

I’m not the right person to advise on wheelchairs as I have no experience. My symptoms have been on the milder scale so I have been quiet lucky. Just another thought though - there are meds to help with fatigue (though it can be trial and error). It maybe worth discussing with your GP/ Neuro or MS nurse when you get one.

Good luck and once again sorry to hear of your diagnosis.

Reemz

X

Sorry about the diagnosis :frowning:

I would echo what Tina’s already said about diet and exercise. With regard to dietary things (ish!), the most important thing is to eat healthily, but also to be taking a vitamin D3 supplement: many neuros recommend 4,000-5,000iu a day. Do get your levels checked via your GP on a regular basis though as too much can be nearly as bad as too little.

Exercise has been shown to be good for MS generally, but specifically for MS fatigue. I go to the gym with a small group of other MSers whose disability is very varied (from no stick to almost full-time wheelchair user) and we have all seen benefits from it. A lot of people say that yoga and pilates are good and I’ve heard very good things of tai chi as well. Like Tina, I’ve yet to do anything about doing them myself though!

I would recommend starting slow. Maybe see a neurophysio to get some advice too. My neurophysio told me to start with walking in the garden - so I wasn’t too far away when I ran out of steam! So perhaps you could have a walk in your garden and then add on whatever exercises the neurophysio recommends. If you manage to build up more stamina, then you could branch out into swimming or whatever you fancy. (One word of warning about swimming though: some people find the humidity too much. It’s not something I can do any more either, simply because showering afterwards is such a humungous effort for me!)

As far as wheelchairs go, I have one that I use for longer distances, e.g. going to the supermarket, shopping mall, days out, etc. I got a referral to Wheelchair Services from my neurophysio and they gave me a chair. Unfortunately, it was much too heavy for me to even lift into the car despite being a lightweight model so I gave it back unused and took a voucher instead. (You have the option of a wheelchair that they retain ownership of and responsibility for maintenance or taking a voucher to that value which you have to use at a recommended supplier, but then you own it and they wash their hands of any maintenance issues.) Thanks to a generous contribution from my parents, my chair is a matt black Quickie Helium with a Freewheel attachment that allows me to go over rougher ground - a far cry from the type of chair most Wheelchair Services will provide. But before you go down that route, why not take advantage of the chairs that most supermarkets, garden centres, shopping malls, etc, have for free use? That way, you won’t have wasted any money when your exercise routine pays off and you can walk further! Top tip for shopping malls btw: get an electric wheelchair rather than a scooter from Shopmobility. Electric chairs can go everywhere whereas you have to keep getting on and off scooters, which is absolutely knackering and rather defeats the purpose!

(As far as I know, Wheelchair Services will only supply a chair to someone who needs to use it on a regular basis, i.e. at least several times a week.)

Don’t forget the “post-diagnosis housekeeping” btw: you need to tell the DVLA and you should check through any paperwork that might have a critical health clause (e.g. your mortgage) as MS is a payable condition.

Karen x

Hi, thank you to everyone. The diagnosis has come as a bit of a relief because it gives an answer to my symptoms. Diet wise the neurologist suggested avoiding processed meats, eating more fish and eating more of a Mediterranean diet. I like the swimming idea think i will give it a go!

Thank you Vic

I would just echo what Tina, Reemz and Karen have said and add my welcome (and commiserations!)

Alison

x

Hi Vik Do you have a local MS society branch, you can find out on this site. Despite me not having a firm Dx they have been very helpful and welcoming. I have join the main MS society for a grand total of £5 a year, hive of information and helpline, although you do not need to be a member to access information. My local branch runs chair yoga, and most people stop for lunch and a chat after, also twice monthly get together s and they also arrange meals and shopping trips. I have also been going to aqua med at my local sports centre and swimming which can be a bit hard as I have a numb arm! Some times I can manage only a few lengths and the I have to use a float, but it gets me out of the house. I do try to eat more home cooking but this can be hard on days when I have no grip and I can be a bit dangerous with a knife! I have a slow cooker and can pop pre diced meat, a bag of pre chopped casserole veg and some oxo in and a meal is made! I have also found you can buy frozen sliced or chopped onions and sliced peppers so making a chilli or spaghetti Bol is so much easier. Take care and I hope all goes well